How do you feel when you have been in the sun?

[Whatamess2]

From what I have read, people with lupus often get a rash when they have been out in the sun. I am at the moment undiagnosed but although I don't get rashes regularly when I have been out in the sun, I do feel extremely unwell from the sun. I feel shattered and in pain, whereas my friends are thoroughly enjoying the sun, I am struggling. Is this normal with lupus?

[roobarb]

Hi Toby

I started getting a similar reaction long before I was diagnosed with lupus. I used to love sitting in the sun at every opportunity, but started to notice that even a few minutes would make me feel very ill & often mean I would have to go to bed. Various rashes came later, some sun induced & others not. But it was a dermatologist who finally diagnosed lupus from the rashes.

Nowadays I avoid the sun at all costs, I have a selection of natty hats & high factor sun cream at the ready for summer. We have built a shady pergola in the garden so I can sit outside, & my husband & I have found all the shadiest walks so we can get out & about on sunny days. Unfortunately, he tends to get bitten to bits by the midges, who never touch me for some reason.

Each lupie seems to get a different reaction to the sun, & other members of my local support group are able to enjoy the sunshine. I often wonder whether the reaction is dampened down when the lupus is effectively treated, so it'll be interesting to read other peoples responses. I hope you find your own ways of coping with this.

Very best wishes. X

[Whatamess2 in reply to roobarb]

Many thanks for your reply. I am being treated with hydroxychloroquine although I don't have a diagnoses as yet. I saw a Rheumy last year but that was a waste of time as she just wasn't interested. I have an appointment now to go and see an immunologist in June to see what he can find.

Basically I have been ill on and off since I was 13 and am now 52! I have other auto immune illnesses such as hashimotos and cd4 lymphoepenia.

I try and keep out of the sun if I can and like yourself have found nice shady walks to take with my husband who like yours also gets bitten to pieces whereas I don't. Funny that, it makes you wonder if that is connected?

Anyway many thanks for your answer, it makes me feel as though there are others out there suffering also.

Warmest regards X

[roobarb in reply to Whatamess2]

All the best with your immunologist appointment. It's awful that diagnosis can take so long, so I hope now that you finally get some answers & some help.

It looks like a wet weekend, I wonder how many lupies are secretly relieved!

Take care. X

[faetheness in reply to Whatamess2]

I have recently heard of someone who has only just been diagnosed with Lupus after being unwell with varoius nasty things since his teens! He is in his 50s> I have just been diagnosed, and have been in the sun the last few days ( with Factor 50 cream, as recommended by lupies on this site!) and today, although my face no longer feels as if it is burning, I am suffering. I'm having an "indoors catch-up day" and plenty of rest as I feel a bit nauseous and have a bad head and body pain. How annoying .....

[Cherylv]

I cannot be in the sun at all. Heat, just getting hot makes me sick too. I will break out in the rash on my face, arms, chest, fingers. Nausea, fatigue, weakness. I also have to wear gloves when I drive most of the time. Feel like a vampire lol. When I do go out I make sure I have my hat, sunscreen, long sleeves. It use to bother me at first having to go through all this, but beats getting sick. My rash win last for weeks sometimes months.

[joannebond360]

Hi. Have been flare, fatigue and relatively pain free for 3 months since starting mycophenolate, currently reducing prednisilone. Was feeling great until the sun came out! Have not noticed the sun effecting me in previous years but then my disease has progressed as time has gone on. I went out and did some gardening for 3 hours with only factor 15 on, haven't felt well since and that was a week ago! Feel really upset with myself for not wearing factor 50 and covering up. Used to love the sun! My family can't wait for our summer holiday abroad and now I am dreading it! Used to love the sun and could sit in it all day no problem atall.

I would also like to know if the disease is under control would the sun sensitivity stop or will it always be a trigger.

Jo

[behappy1 in reply to joannebond360]

Unfortunately once I became sun sensitive, it never went away. I miss sunbathing! I still love the sun but unless I'm properly covered and careful, I always end up sick after. Fatigue kicks in and then I'm a complete write-off. I used to have lovely skin, now 5 mins in the sun and my face gets blotchy and rashy. The rashes started few years after the lupus. X

[Lupylass]

Hi there.

I wear factor 50 every day regardless of the weather, at the advice of my rheumatologist. Pre-treatment I would get a rash in the sun. Since being on hydroxychloriquine I don't have such an immediate reaction but the sun still causes problems; last year I flared after painting the conservatory (despite taking lots of sun precautions). The flare was a few weeks after. The year before I flared at the end of the summer; ie after the cumulative effects of the summer sunshine.

Everyone is different, but advice I've had and read from clinicians is if you have lupus, wear factor 50.

[LupusKaren]

As per the other posters, sunshine, UV light, any UV light be it sun derived or artificial makes me extremely unwell. I am unfortunately very light sensitive, and it triggers cluster headaches, not migraines, there is huge difference. With it comes crushing fatigue, mobility issues, pain and relentless nausea. My house is a vampire's dream, blackout blinds, air conditioner. Without sounding dramatic, pretty much renders me housebound during the summer.

[Whatamess2]

May I say many thanks for all your advice. Hopefully when I have been to the immunologist in June I might get a better idea what is wrong with me although I have a strong feeling it is Lupus.

All the best

Sarah xx

[onamission]

Like you I have not been diagnosed with Lupus but have many symptoms and last weekend we were at my daughters it was a beautiful sunny day so we took the dog to the beach I felt so ill within minuet's I ended up with the most banging head ach felt sick tired by the time I got back to the car I was covered in purple bruises

[Elfie1]

Hi all, here we go again I wear factor 50 which is okay for my skin but as soon as I go out when it's sunny +hot, I can't cope, I feel quite ill and my wrists start to swell, with joint pain +fatigue even through the car windows,not to mention the air con. Makes my eyes even more dry.does anyone else get livedo rash much worse, especially on wrists?

[Hidden]

I love the sun but as lupus has progressed over the past 12 yrs I have really struggled. I have been on loads of meds, some worse for melanoma risks than others so have had to alter summer protection accordingly. Fortunately I am not affected too much with rashes, able to cope with face rash as long as I use numerous high factor lotions n potions. However the worst effect the sun has is profound fatigue, even finding breathing a tremendous effort. No wonder most of us struggle with low vit d deficiency is it? Xx

[Lucy74]

Yes! I have just asked a similar question as I had never heard of anyone else getting this sort of reaction with the sun. I get very distressed and confused, and it's really upsetting. As well as the pain when the light hits my skin.

[miacat]

Hi toby I have had lupus for 15 years. Going abroad and I wear a hat and high sun cream it does make you feel ill when you are out in it for long try going in the shade and then a bit in the sun

[nancarolyn]

Hi Toby. Can really relate to you. I have had lupus for a long time, but even before diagnoses, when i would sit in the sun, for me it was torture. With young friends trying to be tan and wanting to also, I had to pretend I enjoyed it. So many bad burns and sun poisoning. I do not pretend anymore. The sun feels as if my energy is being sucked away. After many years, of wanting to be like I thought everyone else found , because of this illness I am not the same. Oh well, I am 68 and dont force my self to do things that may be good for some and dangerous for me. Have so much more freedom just saying I am not going to be able to do that. Good luck to you and actually your skin when older will look much better without having been in the sun.

[miccika1]

Yes